Friday, May 1, 2009

I am tired. My body hurts. And there is still a long road ahead of us. A road filled with unknowns and mysteries—nothing new, except that we thought we'd be at the end of of this road today. We thought it was safe to come out of the protective shell we've lived in for the past year. It will be a year in 16 days. I turn 37 in 16 days. I thought Pablo would have a trace of hair growth at my birthday party at Malo in 16 days. That is not our path. We will be eating delicious chips and tacos and our beautiful little boy will still have a shiny, beautiful little head. That's OK. It will have to be.

When Jo Ann and I met with Dr Mascarenhas on Wednesday to review the pathology results, there were no surprises. The tumor was exactly what he thought it would be. On the way to CHLA, Jo Ann said something that was so simple, it blew my mind. She said, 'Dr M has already painted the worst-case scenario for us. And we've worked through the fear and pain and sadness of that for the past week. The worst that can happen today is, he'll repeat what we already know.'

She was right on all counts. It didn't make the meeting hurt any less. It didn't make the room feel any less compact, tight, suffocating. The message was no less shrill or heart-wrenching. It spoke nothing to my visceral desire for a magical treatment option—an option that does not exist. Jo Ann's simple, black and white statement did speak to a couple facts that we live by, and that we lost our way on over the past few months, and are back in line with: we have to cut the s**t out of our lives, our thinking, our hearts, our minds + mouths, and we have to get with what really matters. We have to connect our hearts to one another, and together we have to float on faith.

I can tell you what it looks like where Jo Ann and I are standing right now. Better, I can tell you what it doesn't look like. There are no easy-way-out schemes being pimped on flashing billboards. There are no plea bargains being talked about it hushed tones in the corridors, like you hear in a court house. There isn't a whisper campaign to get us a leg up in life. There are no secret area codes or white lists. The headlines on the front page of the newspaper have no bearing on us whatsoever. There isn't even a right or a wrong. None of that stuff exists where we are.

There are facts. And there is faith. That's it.

I can reduce it one step further: there is life and there is death.

And in that, as parents, we can't make a right decision, and we can't make a wrong decision. We can just make the best, most informed decision based on the scientific information available to us. There were never any guarantees with Pablo's treatment. When we took him to the ER at CHLA on the night of my last birthday, we were in pieces, shattered on the floor. Soon after, we threw out the useless notion that we needed a guarantee to wake up in the morning and kick the piss out of Pablo's disease. With the news last week, we feel back into the rabbit hole of sadness and despair. Who could blame us? But we found our way, and the needless weight of certainty has been lifted from our hearts and shoulders. Jo Ann pulled us out of it. In my doped state, I stayed on her heels. And we found dry land.

So, now we have a whole new list of treatment options to review. And the road in front of us is not at all what I expected. For me, it has no expectations. When we went out to the desert for Coachella weekend, I was starting to feel my heart thaw out—starting to feel that the coast was clear to have an expectation or two. I was beginning to feel that I could take my armor off, put it in closet for a while, and start planning a family vacation that involved a beach or a lack of connectedness to the first world. I am still determined to make something like that happen.

The treatment option that is leading the pack right now would give us one week away from the hospital every four weeks. Taking a trip will have to be so well thought out and so brief. For instance, we couldn't go somewhere that didn't have a first rate oncology program nearby. And, how in the hell are we going to take our immuno-compromised son on a commercial airplane?

As I write, I'm realizing I haven't thought any of this through. And you are seeing, as I am, that it's not feasible. So, maybe we'll go out to the desert regularly. That doesn't involve a plane. Friends have made two houses available to us out there. And we love it out there. Most important, Pablo loves it out there.

And we can go to the mountains. That would be fun.

I want to tell you about the day Pablo and I had at the Griffith Observatory. It was fun. And bright. Pablo stood on a bunch of special scales that show you how much you'd weigh on another planet—Mars, Uranus, Pluto, and so on. Some of them, you'd weigh nothing. Others, way more or way less than you do here. Planets: what a strange concept. I wonder if there's a planet where cancer wouldn't exist? At the healing circle yesterday, Pablo said he wanted his bumps to go away, into space, where it's cold. When he said he wanted to go to the Observatory today, I knew it was the right place for us.

As Pablo bopped around the main exhibit hall, looking into viewers, and jumping on scales—putting his hands on all the hands-on exhibits—he looked longingly at the other children. And he didn't seem to notice that a steady stream of children were staring back at him, the boy with the bald head and no eyebrows. At one point, we ran into our friend Carrie Holt. As I was talking to her, I noticed Pablo staring at a boy about his age. When the boy walked past Pablo, P followed him for a few steps, stopped, and watched him as he trotted through the eating area. That was it. He didn't say a word about it. He just did it, and walked back to me when he was done.

The whole time we were there, my guts shivered and quivered. I would have pulled my sunglasses down over my eyes and wept, but it hurts my back too much to weep. So, in uncharacteristic form, I swallowed down my tears and covered them with the worst fake smiles I could pull together. Pablo didn't seem to notice. And good for him. He doesn't need any more sadness or heaviness in his life.

In the gift shop, P picked out a rocket ship that is three feet tall and simulates takeoff. On the way out, he said, 'Papa—I always wanted a rocket that takes off.'

'Me too,' I said. And I wasn't lying. Pablo reminds me that it's safe to be on Planet Kid, even when you're 36.

Tomorrow I'll write a little more about our time on other planets, and a full-on pile of words about the Pablove Foundation benefit show last night. Right now, I need some time to ease my mind.

Jeff...I think about your family and Pablo everyday. I say a prayer for Pablo everyday and I was shattered as you were to read that the tumors were back. Keeping up with your blog makes me appreciate my two boys more and more each day. My 5 year old and Pablo would get along famously with each other...some kids don't have to have cancer to not "fit in". Anyway...thoughts and prayers man.... Love, Dana

It is your bravery and faith, your determination and love that makes this journey bearable even for us. I want to wrap my arms around you all, protect you from the invader and carry Pablo out safely. Alas, I can only hope that knowing we all feel this way gives you comfort. Unintentionally you do so much for us.Sending prayers and requests for miracles.